mkoven

I'm having a rough time now, and can't keep up with my exercise routine. I feel okay during, but crash and want to faint soon after. For cardio, I normally alternate between recumbent bike or walking. I much prefer walking outside-- more interesting, natural light, easier on the knees. But the weather is awful, it's harder for me to stay upright with my current flare... Otherwise, I love pilates. I take an individual lesson once a week. I also have home exercises from a pt. One thing that's helped my legs that is semi-reclined is a "total gym"-- it's like a gentle leg press, much gentler than one you would find at a standard gym. A PT recommended it. But I"m bummed, because I'd worked up to 30 minutes of walking, and now I feel too faint to keep it up.

Still pleased to report that midodrine 2.5 is helping pull me out of my afternoon bp slumps and swings. Afternoons are bad, and I was taking a nosedive. And then my bp is all over the map-- high and low. I took midodrine, and it seems to eliminate the highs and lows, and just keeps me even, so far. Which also helps my stress-level, because I really can't handle the stress of feeling I'm on the verge of going down, and the adrenaline surges as I recover. If I go through that cycle too many times, it seems like it aggravates everything. I wish I didn't need it at all and don't know why I'm having more problems now. But in the interim, yay to something that helps.

Hi, I'm going to have to leave my local town for ncs treatment. Does anyone have experience with Janice Gilden in Chicago? Thanks! Michele

Well, that's a chilling story. Can you pm me more information about who she saw? I'll be seeing Merle Diamond, the daughter of the founder.

Thanks, you guys. It is really hard to tell when it's an emergency when the standard symptoms are so extreme. What are we supposed to get used to and live with??? I felt a little stupid going in, but I"m glad I did. The er doc did ask what was new this time-- and I guess it was the severity, frequency, and unrelenting nature of the symptoms, which are not my norm-- and the bit about having it happen reclined too. So I guess the rule of getting new or worse symptoms checked out applies. Apparently the tech at the er neglected to turn on the 24 hour holter monitor, so nothing recorded. arrgh. She was nice enough, but I hope she gets a good scolding. What the ??? I'm now on an event recorder for 30 days, that turns on automatically when there's something irregular. That's somewhat reassuring. It's gone off twice on its own since yesterday--once for no reason I can understand, as I felt fine, once when I started walking faster through the snow. But when I called in, the people on the phone weren't concerned. But they can't tell you what it shows-- only if you need to call your doctor. I"ve pushed the button myself when I've felt faint, but none of these times has it triggered itself-- which is interesting. The er doctor stressed that these things don't pick up bp, which is probably my main issue. And I think it only triggers bradycardia if I drop below 50 and tachycardia if I exceed 150. My bp has swung between 80/40 and 150/100 in a short period, and maybe that's what I'm feeling-- the sudden dips, and then the surge as my body tries to find middleground and overshoots? It's a little annoying that you can't call in the events on a cellphone. and apparently our house cordless phone doesn't work either. luckily we still have an oldfashioned phone with a cord-- but I'm sure a lot of people don't!

It looks like too much magnesium is rare, but can cause hypotension...hmmm, maybe I should cut back to 400 mgs, and make sure I take calcium with it???

A related thought-- I actually ran out of calcium and haven't been taking it for several weeks. Just stocked up again yesterday. So I was taking 600mgs magnesium all that time, without calcium. After a little "quick and dirty" online research, perhaps that wasn't such a good thing? The two have to be in the proper ratio? So maybe if I add the calcium back, it will balance me out, and I'll go back to my "normal" ? Again, I'll freely admit that straws are being grasped at... does that sound at all plausible, or the nutty ramblings of a desperate person???

Okay-- maybe I'm grasping at straws, trying to figure out if there's anything I"m doing that is making me worse. Here is a list of supplements and drugs I take: calcium multivitamin vit d magnesium (600mgs) B2 400mgs CoQ10 (200 mgs) glucosamine 1500 mgs C 750 sam-e 200mgs allegra singulair I've added the magnesium, B2, and coq-10 in the past two-three months to help with headaches. Does anyone see anything here that could flare me up? Could the magnesium or the Coq10 worsen hypotension, as they help people with high bp? Nothing I've read online suggests these could pose a problem, but as they're supplements, not drugs, and are less tested...i think I"m getting reputable brands, but ???

So I wondered how midodrine would affect my ability to exercise and my post-exercise symptoms. Until my recent flare, I'd been able to walk for around 30 minutes at a time, with breaks to squirm joints around. It had taken a while to get to that point, but I was pleased that I'd worked up to that. However, since my recent flare, I've barely been able to handle the five minute walk from my office to the main department office, without feeling awful. So after this afternoon's dose, after confirming that vitals were reasonable, I went on a 20 minute walk in the snow-- so actually a little more strenuous than usual, as you have to step through snow drifts. I felt pretty much okay during-- tiny headache twinges. I measured my vitals when I got in: BP139/107, hr 102, right after stopping. I waited fifteen minutes and remeasured: 118/76, 78. I felt a little bit woozy, but NOTHING like without midodrine. Will check again periodically, this may not be the final word-- but if this lets me be more active, great! It feels so strange to be taking something to raise bp and constrict vessels, when most of the health talk out there is about the reverse. And as a 40+, non-athletic, non-slender person, it's a little hard to believe that may be what I need these days. Just want to make sure I really do tolerate and need the treatment, it really helps, and doesn't make anything else worse-- and that this really is the most conservative, reasonable treatment at the moment.

Thanks, Nina! It's amazing what a tightrope/delicate balance all this is-- and that something that worked at one time becomes problematic later. So far I've developed allergies (hives) or twitches on the various ssris and snris I've tried. Beta-blockers are out because of history of allergies and anaphylaxis. I've heard florinef can still be bad for bones (though less than prednisone), so I'd prefer to hold off. I suppose it's a possibility. I already have some bone issues. I hope the midodrine works for me without too many issues. I hope I can get back to my baseline soon, where stockings, salt, and fluids are enough. Not there yet though.

I'm starting with 2.5 mgs. I'm very sensitive to meds, so I always start with very tiny doses. I'm older than your son--almost 41, so I don't need to get high bp. I also have ehlers-danlos, a collagen defect that causes tissue fragility. I've been told that I want to avoid actual high blood pressure, as that's bad for my blood vessels too. I don't have actual aneurysms, but several infundibula in my brain---slight dilations of vessels--so easy does it, I guess.

Hi Nina, Do you mind if I ask what brought you to discontinue the midodrine/florinef combo? Michele

It's too early for me to tell, so please, other folks, chime in. It actually seemed like my bp was surprisingly stable on that dose. I was worried, because my bp was swinging from 80/40- 140/90 without midodrine, that the midodrine would swing it too high. But in part, maybe????, because my high swings are my body's desperate attempt to correct the low bp, if my bp never went too low, it didn't need to swing up. I didn't get over 120/70, and mostly hovered around 110/70, hr 70. After the dose wore off, I did swing low--81/40, sitting, which I didn't like. Again-- just my first attempt, but will report on future attempts. It would be nice to have this in my arsenal, if I can get used to the creepy surge feeling.

So I took my first dose of midodrine about an hour and a half ago. I felt some weird scalp tingling at first, a weird rush, a chill type wave intermittently and a little racey. A little hard to focus. Some head pounding. But my bp so far is around 110/75, pulse 70 something. i didn't like the initial surge, but I feel much less faint/short of breath/chest tight than I have in days. I even feel like I could go to the store now, and not want to come crashing down. And this is with a teensy dose of 2.5 mgs. thanks to everyone for your input. I don't know if this is my answer, but it's seems somewhat helpful, despite a little weirdness. I have my doc's blessing to try this on an as-needed basis. I hope I won't need it too much, but here's to some improvement.

Right now they aren't helping me too much, but yes, you should get an rx for your first pair, to get properly sized. Once you know your size, you can then order more from brightlife or ames walker. i wear a "medium" 30-40. when i'm doing better, i can get away with knee-highs. now i need the waist-high. (It's funny, because I'm not a medium in other stuff-- I wear a women's large or extra-large. but these stockings are not sized the same). i like open-toe, as my toes get really sweaty, and then i end up with some foot fungus (sorry!). I then put cotton socks on top so my feet don't freeze. the biggest annoyance is getting them on and off. once they're on, i forget about them. i only wish the stockins would help me as much as they used to and that they were more aesthetically pleasing.

For the past week or so, I've been in a bad flare. I've been fighting fainting, breathless, chest pain. I"m used to flaring around my period, but it's been over now for a good four days and I can't get back to my baseline. When I got to work, esp. later in the day, I have to talk to people with my head between my knees to stop the chestpain. Walking around makes it worse too--maybe because I'm upright? Falling asleep triggers it, as I guess my bp drops, triggers chest pain, breathlessness. I ended up going to the er last night just to confirm that this is a worse version of "same-old-same-old." (Of course, whenever I'd mention to anyone "normal" that I had chest pain, trouble breathing, and wanted to faint, they'd look really worried and ask why I wasn't in the ER. This is so much worse for me than usual, and unrelenting, I agreed. Though I feel kinda dumb.) The doc seemed to think this sounded line my ncs, which he said he usually only sees in 90-year olds (thanks!), and thought would get progressively worse (really???). To be safe, he ordered the standard cardiac bloodtests, ekg, telemetry while I was in the er, chest xray, which he expected to be normal. Just to be safe. No stress test, as I had a normal one a year ago, and they're such an ordeal, as I have to do the chemical one. I was released with a 24 hour holter monitor, to catch the weirdness when I sleep. Luckily I could reproduce my symptoms for him, while hooked up to telemetry, by going from reclined, to sitting, to standing. So he saw me feel crummy when upright, with chest pressure, hard to breathe, wanting to throw up, greying out. He said there were more swings in my pulse than typical, but otherwise, looked like a normal rhythm. He said he doesn't understand what would be causing the chestpain when I'm upright. Diagnosis-- near syncope, atypical chest pain. So I'm relieved to be told that this is nothing new. I'm really frustrated that I'm in this ncs funk, much lower than my baseline. And I"m supposed to get geared up for xmas-- shopping and travel, in the midst of all this??? I'll do as much shopping as I can on amazon. But we're driving from Illinois to Virginia next Friday. Granted, we do it in a ncs friendly way-- minivan, seats collapsed, me reclining, but it's still exhausting. And then I'll have to explain my weirdness to family that has never seen me this symptomatic. Sorry, just venting. I don't want to be worried. It is good to be reassured. But it is really hard to feel safe, when the symptoms are so extreme, and no one "normal" can relate.

I've had this before, but now in the middle of my ncs flare it's bad. Falling asleep last night was creepy-- every time I"d start to nod off, my throat and chest would tighten, and I'd wake up because I couldn't breathe. This is my current theory-- breathlessness/chest pain in one of my symptoms when my bp drops when I'm awake. When I'm awake, it almost always improves if I put my head down or feet up. I'm guessing that when I fall asleep, my bp also drops, but might also drop too much/too fast, and so even though I'm lying down, I'm not getting enough bp to breathe easily. Luckily, I guess my body is smart enough to still wake me up (but not so smart to keep the bp up). For me not being able to breathe is a key symptom of lowbp. This went on last night for several hours. I got up to consume salt and fluids and then tried to stack as many pillows as I could to have my feet/legs above my heart. I'd previously had my head propped up a bit because that helps with headaches, but put my head totally flat, so gravity was minimal. I guess I'm still here, though quite underslept. My husband and I thought about going to the ER, but other than monitor me, I wasn't sure what they would do. And I"m sure it would not have resulted in more sleep. I'm tempted to call my doc-- but what would he do? I clearly need to get the bp stabilized. He still hasn't called in the midodrine, not that that would be for night time. And now I"m swinging low and high--when I took my bp after wakening with a breathless start, it was up again at 140/90. Who knows what it was as I was actually drifting off. But I do appear to still be here... Shall I continue to assume that my body will wake me up if my bp is too low and I can't breathe?

Thanks, Persephone and Melissa!

I've gotten an appointment at the Diamond headache clinic in Chicago in early January. They look very reputable and serious and I hope it goes well and that a "plan" emerges from my migraines. My only concern is this-- I just got their packet in the mail with lots of paperwork. They ask an awful lot of questions about my psychological issues, history of psychotherapy, personality, etc... This makes me nervous, as I don't want to get told it's in "my head." I'm happy to concede that stress makes things worse, and I'm certainly not free of all psychological issues, but what to make of all these psych questions? I do talk to a psychotherapist and she'd quickly back me up that my various health woes are not some strange somatization. It just strikes me as odd. And I really don't want the hysterical female diagnosis. What do you all think??

Thanks, Persephone. Once the darvocet wore off, the faintness improved-- though I'm still in a bad ncs flare overall.

So i've been posting a lot recently about my recent ncs flare. It kicked up last week with my period and, though that's over, my ncs has yet to settle down. i'm still pretty unstable. My pcp has yet to call in a prescription for midodrine. He seems reluctant. In all the ncs commotion, I got a nasty migraine last night which got much worse today mid-morning. (My bp was all over the map yesterday, from 84/44 to 140/93. I kept struggling for breath, tight chest, poundy head, put my head down or feet up, feel better, repeat). I have an appointment in early january to see a headache specialist in Chicago (thank you, doctorguest), but in the interim am sort of on my own. At my disposal I currently have ibuprofen and darvocet (prescribed for eds pain, to take as needed. I usually only take it a couple times a month after a dislocation). I hadn't taken darvocet in a while, but did when I just couldn't get the head pain to relent. Well this has never happened before with darvocet, which I usually tolerate well, but man do I feel woozy. I feel so much closer to fainting and all kinds of blood pressure rollercoaster effects. I'm wondering if in my current bp disequilibrium, I just couldn't handle the darvocet. it did help the head pain, but i keep feeling like i'm sinking, sliding down a hill out of control. It's 2.5 hours since I took it, so I hope it starts to wear off. Is it a known side effect that darvocet or other opiates can mess with blood pressure? I hope darvocet isn't off the table for me, as it's one of the few pain meds I've been able to take. (But I desperately want off this ncs rollercoaster. It feels like &*$. And each time I feel like I'm about to go under, I get a huge surge of adrenaline and/or anxiety. And this can go on all day. Enough!!!)

Thanks so much for your input! How high does your bp go on midodrine? Can you exercise with it?

This repeats a post under another topic a little, but was curious to hear from people who have taken midodrine. I'm going through a bad ncs spell now, but my symptoms are very variable. I have weeks at a time when I'm fine with just stockings. But now, (around my period), I keep having near faints, and it's really disruptive and miserable. (I had to sit through a two hour meeting, where I was convinced I was going down. I keep having to put my head between my knees, as I feel like I'm getting pulled down the rabbit hole. ). My doc and I were discussing the possibility of using midodrine intermittently-- on an as needed basis, around my period. He doesn't have experience with that, and thought it had to be taken continuously. What are people's experiences with dosing, and intermittent usage? Could I take it just a couple days a month? Also any idea how/if it would affect migraines? Thanks!!! Michele

Thanks, Melissa! I'm eager to hear your followup!! I guess my doc hadn't heard of its being used intermittently and thought it might make matters worse. But I have times when I'm really not so symptomatic. I really prefer the idea of something that's not a commitment. I'm wondering if you have a link to a site that describes intermittent use... As with everything, I'd want to start on a teeny dose to see how I react... Another question I had was whether midodrine would affect migraines???? Thanks!!!

So I guess the doc appointment went okay. He took me seriously. In terms of the ncs/faintness/slowed hr: 1. I'll get a 60 day event recorder next week. 2. a return appointment with electrophysiologist 3. I am to go to the er if I actually faint, or if my systolic bp drops below 80. If my heart rate is shown to be consistently getting too low, he thought the electrophysiologist would recommend a pacemaker. but he did say that hr can drop with bp with ncs. it's just not good for hr to get too slow. He thought that indeed my shortness of breath is from ncs-- if I'm just not getting enough bp to get oxygen. 4. I might try midodrine, a drug that raises bp, but he asked me to post to dinet to see if it gets used intermittently. We were both wondering if I could just take it for a week or so a month, when I am premenstrual/menstrual, and really symptomatic. Any opinions/experience with intermittent use midodrine? So I guess it was a good appointment. I felt listened to. There is a semi-plan. Thanks, you guys!